July 2009

Well, our semi-annual trip to the dentist (aka D-Day) went pretty well. And by ‘pretty well’, I mean we achieved the following goals:

His teeth got cleaned.

He doesn’t require any additional dental work.

The dentist, hygienist, and staff were nice to us and respectful of the J-Man’s needs.

We didn’t freak out too many other children in the office. (Yay for the separate room!)

He still agreed to live in our house after it was over.

No one sustained any major injuries.

I tell people, to an outside observer the whole thing looks awful and probably something akin to torture. To us, everyone got through it, we made some progress, and at least it was better than last time.

We liked our new dentist, too, which was an unknown to us beforehand even though they came recommended to us. The office was smaller, so there weren’t dozens of people and lots of noise and overstimulating crap in the waiting area. It was all fairly chilled out really. I particularly like it when the dentist and hygienists are calm and of even temperament no matter what happens during the cleaning and exam. I think the J-Man could have sprouted flaming arms and horns out of his head and it wouldn’t have affected them any.

We, of course, had to hold him down for everything. I had his torso and legs and occasionally a shoulder. Mary had arms. The hygienist had his head between her forearms and braced against her body while she worked. The fact that she got that spinning cleaner/polisher thing in his mouth and cleaned all of his teeth was pretty amazing, though I know he was in terror pretty much the whole time. [Insert parental guilt here.]

We got through it in 10 minutes or so. When it was done, he calmed down almost immediately in my arms. His ability to decompress after something that stressful is quite a testimony to his growth and general bravery. I can’t imagine much that would be harder on a child with serious oral sensitivity than to go to a dentist. It breaks our hearts to have to do this twice a year. Our hope is that eventually he’ll get more or more tolerant of it if we can set good dental habits and lay the groundwork now.

All that holding him down is not only emotionally painful, it’s also physically rough. Last appointment six months ago, I pulled something in my back and partially sprained my wrist from holding him. Last night, my Achilles tendon hurt (from bracing my feet on the floor) and now my low back feels like I did some sort of marathon weightlifting in the gym or something. Well, Ibuprofen and an ice pack should have it back toward normal in a day or so.

Good news is that his teeth are excellent! I know a lot of parents of autistic children struggle with their dental care. It took us forever to get teeth brushing incorporated into our routine. If we could go to the dentist everyday (perish the thought), he’d eventually get to a point where he’d be much more tolerant of it, but obviously there’s no way in this world that would happen anywhere other than our nightmares. But we can do things that will hopefully reduce his oral sensitivities – something we’ve been working on for over three years now.

We appreciated the calm and positive attitude they had and the respect and sensitivity they showed to the J-Man. So we’re pleased we made the change in dentists and will go back in six months to do this all over again. Each time it seems to get a bit better, so here’s hoping.

Tomorrow is our scheduled, semi-annual dentist day, which we’ll affectionately call ‘D-Day’. We discussed the saga of his last mouth invasion in a previous post. Feel free to read about how much fun that was.

Since the J-Man’s last trip to the dentist, we made an important change. We fired his now former pediatric dental practice.

Were the dentists nice? Yes. There was one doctor in particular we really liked, in no small part because his wife used to work for the doctor who diagnosed the J-Man with autism, so there was awareness and understanding all around about our situation. The problem was, there was no way apparently – at least not for us – to request which dentist we got to see. (I think their practice currently has 4.) The other dentist we saw was OK enough. I thought the hygienists pushed him pretty far, but I kinda get the philosophy behind it. It seems like we weren’t allowed to ask for the one we really liked, and that was irritating.

For us, the decision to fire them was two-fold.

1. All special needs kids are seen only during the noon hour, which not only makes scheduling a nightmare and interrupts his school day (not like we can go back to school after all that), it feels like yet another example of us being segregated from the world. That said, I do understand one of their reasons behind it. Their staff shifts overlap around noon so they have more hygienists there who can gang up on the kids – so to speak – and provide additional support. And really I could live with this if it weren’t for the crap in point #2 below.

They really stretched their luck, however, in that we were seen well over 30 minutes late for our 12:00 appointment last time. Please do not make autistic kids wait that long in a crowded, noisy, pediatric dentistry waiting room with enough noise, TVs, fish tanks, video games, and other insane stimuli to drive us all batty with nothing he could actually do except wander in and out of the chairs like some obstacle course.

So they reserve this time for special needs kids, but can’t actually see any of us anywhere near on time. Well, thanks for nothing.

However, all that alone probably wouldn’t have driven us away.

2. It was the attitude of their staff that did it. They acted like they were doing us this huge favor to schedule us in the first place. Once we got his school schedule for the fall figured out, we realized his originally scheduled appointment fell on his second day back after this long break. So we called many weeks ago to reschedule since we knew he’d need consistency at school after this long break. It’s not like we were set on getting an earlier appointment. We actually asked for an appointment during his next break two months after his original appointment. (Reminder – we called and asked to reschedule weeks ago.)

“I’m sorry. We don’t have anything available until next year.” (insert attitude here)

We know [expletive expletive] well that they have appointments. Just not for him. Before we ever went there, we got in with maybe a couple of weeks notice. Now that I’m sure his file is painted with a giant red flag – or what I’ll call “The Scarlet A” – it’s a six-month wait.

So, we asked around and found a new, smaller dentist practice. Yes our appointment is still during the noon hour, and presumably for the same reasons, which I don’t have a problem with when combined with a respectful attitude toward our kid. At least they were up front about why and were polite and welcoming, and they were able to get us in quickly with no fuss. We’ll see how this carries over into the actual appointment.

Just to be clear – no I don’t expect anyone to roll out the red carpet for us. I don’t expect sympathy or special treatment or anything. But I do expect the J-Man to be treated with respect and as a child with feelings and integrity regardless of whether he can talk to you about them or not. He is scared to death of having his mouth worked on – and we feel like crap as parents enough as it is for putting him through that – and if you’re not understanding and sensitive to that about him, you can go to hell. And if you want our business, don’t act like you’re doing us favors. Nobody is that good.

Here’s an odd fact about our site. Over the last couple of months, more people come to our site on Mondays than any other day – by a wide margin. I can look at the site statistics graph and see it peak like crazy every Monday.

Things like that fascinate me for some reason. If you’re like me, the weekends are utter chaos and you spend Monday – when presumably you might have a little more free time – trying to figure out how it all went so wrong. Maybe your child is back in school or preschool – after one of those crazy weekends where everyone is off schedule – and it’s a good day to look some things up.

So, do you do more autism research online on Mondays? If so, why? Maybe there are some useful insights in here somewhere. Of course, maybe this only interests me.

Slight change of plans this week as we went to meet the J-Man and Mary’s family at the beach a day earlier than planned. We stayed a couple of days and then came back home – and we let the J-Man stay there for the rest of the week. He was having so much fun at the beach that we couldn’t make him leave yet. That was more important than our uneasy second thoughts, which of course are more about us than him.

He comes home tomorrow, and it has felt like missing part of my arm for most of the week. It has been good for us to have a little vacation (or stay-cation where we really played catch up on work and the house for most of the week), but God do I miss him.

It was something to see him lead everybody he could to the back door of the apartment where we were staying in hopes of finding anyone who would take him down to the beach – regardless of the time of day or night. It was really sweet when we got there that he led me down to the beach, just the two of us, like he wanted to show me this amazing thing he’d discovered. I swear it even sounded like he was singing to himself while we were walking down the beach access ramp.

We watched him walk up and down the beach with Mary’s mom, stick his legs a little bit in the surf, and get some sand on himself. They drew literal lines in the sand to visually show him where he couldn’t go past on the beach, and for the most part, he followed those boundaries. (Good thinking on their part – visual cues!) Admittedly he was very little the last time we went to the ocean, but he was so much different this time. Clearly he loves the beach and the water. It was like watching a different kid.

There was only one problem. Most of this happened while I wasn’t around. Whenever he saw me, he ran up to me, held his arms up insistently and sometimes a bit frantically, and wanted me to hold him, to the point of just about having to carry him everywhere. Yeah, I’m a softy toward him a lot of times, but there was something else going on here that I’ve yet to figure out.

I’m a believer that in kids who are minimally or non-verbal, behavior itself is communication, and one of the most essential forms of it they have to draw on. He was trying to tell me something, seemingly very important, and I wasn’t (and still am not) sure what it was. Every time I was in the room, he was like this.

Was it his reaction to being apart from us? Perhaps. Was it more than that? Maybe, and I think likely. Was he in some sort of distress? I don’t think so since he was otherwise having a very good time. This has been really bothering me this week. What all is he trying to communicate to me? And why me specifically?

We wanted to take him to the North Carolina Aquarium while we were there, which is about 5 minutes from where we were staying. I thought he might enjoy the fish and the ocean colors and all the water, but all he wanted to do was cling to my neck. If I tried to put him down, he either did these odd movements around me and refused to hold my hand or just turned around and tried to climb back up me. I’m not even sure he registered any of the fish and ocean exhibits. I felt really depressed by the whole adventure, of course because I wanted it to go a certain way and it didn’t (again, my emotional baggage and not his). I felt like the guy who’s clueless and doesn’t get the obvious message blaring right in front of him.

We also tried going out to eat with the family, and he refused to be anywhere other than on my lap. He was pretty miserable the whole time. He had gotten up really early that morning and was very tired, but it was still uncharacteristic of him.

I know he missed (and still misses) us, and we certainly miss him. I just feel like there was something more going on. Around others, he’d do his thing on the beach, walk up and down it and play some in the water, play out in the backyard of the place we stayed, let others read him stories, and generally be himself in the ways I’m used to seeing him when he’s in one of his more calm and sensory-balanced states. As soon as I came into view, though, everything about him would change.

If all behavior is communication, what’s he really trying to tell me? I’ve been carrying this question around all week, and I don’t feel any closer to an answer.

Having the J-Man gone has been rather disorienting. We’ve handled it OK enough I suppose, mostly by staying incredibly busy and not allowing ourselves time to think much about it. Though I did turn on the video monitor a couple of times last night and tip-toe by his room once just from seriously ingrained habit. I admit part of me has accepted that I did need a bit of a break, and having a lot of continuous time to dedicate completely to Not-So-Little E has made me realize how important quality time like that can be.

Earlier today, I was staring out the kitchen window at our little patch of woods in the backyard. I was wondering (or worrying about) how the J-Man was doing, stressing about life, and generally looking blankly out at nothing when Nature decided to tell me what she thought about all this.

I was startled out of my infinite stress loop by a squirrel falling (with style) out of a tree and onto the top of our swing set, where – without any hesitation or wasted motion – it decided to assume the cat stance and lick its own butt.

Well, that’s one way of getting your point across. I get it, already. Thanks. Now don’t do it again!

I usually start writing posts with some idea in mind about what I want to say. Right now, I don’t. Regular readers have probably noticed that our posting frequency has been way down lately. A significant part of that comes from the J-Man being on break from school and us trying to figure out caring for both him and Not-So-Little-Anymore E – or more accurately, how to get through most days with everyone still relatively in one piece before we fall into bed.

We’re over halfway through the break, and much of the rest of it will be busy enough with family and other things to keep the days moving along with various people around to help us. It really has felt like we’re completely adrift within this month called July, almost like we’re in our own month with its own unique name that exists on no calendar other than our own. Autism has a tendency anyway of upending any sort of standard measurement of time – sometimes more beautifully than others – but lately it’s felt like living in a parallel universe.

The J-Man has seemed to be struggling a lot lately. His attentiveness to activities feels like it’s declined to near zero unless it’s something he can zone out on. His verbal communication seems more limited and frequently patchy, and his moods have tended toward abnormally quiet and clingy. The last couple of days, his appetite has been way off. This has all been unsettling. I know he’s way off schedule with baby and general life chaos and no school to go to for routine and grounding; that just doesn’t help me feel better about it. The part that hurts most for me right now is that I don’t have a clue about how to fix it.

The J-Man is actually heading to the beach for a few days with Mary’s parents starting tomorrow. (Not-So-Little E will be staying here with us.) They’ll be meeting up with one set of aunt/uncle/cousins for the first half of the week. We’ll be going down there about mid-week to visit with everybody for a couple of days. While to most normal parents, this would seem like a welcome respite, I have never found the prospects of being away from the J-Man for long much other than very stressful.

The J-Man is nearly 4 years old, and I think I could count the total number of nights we’ve been away from him on both hands with fingers to spare. We do pretty much everything together. When you’ve spent almost his entire life taking him to countless assorted therapies, working with him every day, watching him carefully in any open space you’re ever in, trying to read every noise or sign or gesture that indicates how he’s feeling or what he wants, and planning out everything in every detail (remember, the right shoe goes on first!) to avoid peril or disaster or better yet to make the day go well, turning all of these off for a few days is rather like telling your body to stop breathing until further notice.

I know rationally that the state in which I find myself in these situations isn’t a particularly emotionally healthy one. Mary and I both need time and distance like everyone else does to feel something resembling normal. We all need breaks from each other, and we need to be adults occasionally independent of everything else rather than 24/7, full-tilt parents. And in order to grow into an individual, he needs to separate from us sometimes and stick his toes out in the world. I know all these things rationally. That does not make it any easier.

One thing I know informs much of my writing is perspective and the ability to find some on a regular basis. For the last several weeks, I feel like I’ve lost that – and on many days, entirely. Everything feels reactive and instinctual. I barely remember what just happened a minute ago and have no idea what I’ll be doing 5 minutes from now during much of the day. Instead of pulling back at night when the kids are in bed, I just want to zone out or do something that lets me distract myself until I go to sleep. As I write this, I realize this is not a very good – let alone sustainable – way to live.

And I’m even adrift trying to figure out how to end this post. I guess all you can say is that this is what it is. I know it’s “perfectly normal to feel this way” and “not to beat myself up over it” (like pulling the string on the back of a talking Sid the Psychotherapist doll), but those sorts of things aren’t really what reassure me. We’ve gotten through a whole lot of challenges so far, and we will again, even if it doesn’t always feel that way in the moment. That’s the constant in this house that I draw endless comfort from.

Maybe he’ll learn some things about how to be away from us and we’ll learn some important lessons too. I should probably start with actually going to bed at a normal hour… starting now.

Background info: we’ve pulled out lots of the J-man’s old toys for Little E to play with/watch lately. (Little E won’t be little for much longer. Maybe we should just call him Dale Jr.) When the J-man was about 21 months old, we had a “full evaluation” from the county. They came to our house […]

Last year, the J-Man rather enjoyed the fireworks we set off in the driveway. We just do the small, legal (i.e., rather lame) kind with some sparks and a fair amount of noise. Since it gets dark after 9:00 and he doesn’t stay up that late, we set them off still in daylight. We tried […]